Medical transition for trans people has only been available in the United States since the 1970’s. Because it’s so new we only have limited data about long term risks and benefits. When I was first learning about trans health I was frustrated by the lack of data. Are trans women protected from heart attacks like cis women are? Do trans men have lower risk for osteoporosis like their cis men peers do? We simply don’t know.

Today’s study is an exploration of the long term morbidity and mortality of trans people who have had surgery. Morbidity and mortality are just fancy words. Morbidity refers to disease or suffering. For example, morbidity may refer to how many people had a heart attack but are alive. Or how many people live with depression, or low back pain. Mortality is how many people died.

Who did they study?

Simonsen et al took advantage of the Denmark health system. In Denmark, there is one national health system. So they were able to look up how many trans people there are in Denmark. They were then able to figure out who had had gender-related surgery. Using medical billing codes, they looked at the diseases and disorders those trans people were diagnosed with. And they used death certificates to determine cause of death. They looked at records from 1970 to April 2014.

In total Simonsen et al looked at the records of 104 trans people. 56 were trans women and 48 were trans men. Surgery was performed between 1978 and 2010. So the patients with the most recent surgery would have been 4 years post surgery.

Most trans women (65%) started hormones age 22-42 and had surgery 9-23 years before the study. Trans men started at similar ages, 21-38 and had surgery 4-1

Beech trees in Denmark, where this study of morbidity and mortality was done

6 years before the study.

Their findings

In total, 20 trans people (19%) were diagnosed with a disease/disorder before surgery. That increased to 24 after surgery (23.2%). However, the difference wasn’t statistically significant. That means the difference was likely because of chance.

Diseases seen in this study included cancer, cardiovascular disease, musculoskeletal disease, chronic lung disease, and alcoholic liver disease. Almost all of the diseases were related to behavior and not to hormone therapy or the surgery.

Cardiovascular disease was seen in 10.7% of trans women and 25% of trans men. Compare that to 3.5% of cis women and 4.4% of cis men. The high rate of cardiovascular disease is likely a result of smoking, since high rates of chronic lung disease were also soon. Chronic lung disease includes COPD, which is usually caused by smoking tobacco. Chronic lung disease was seen in 3.8% of trans people. In comparison, 1.3% of cis people had chronic lung disease. There was no difference between before and after surgery in either cardiovascular disease or lung disease.

In contrast, there was a difference seen with alcohol. Alcohol-related diseases were seen in 3.8 of trans people before surgery. After surgery that number dropped to zero.

Musculoskeletal disease was unique. It was found in 10.5% of trans people, compared to 13.9% of the general cis population. So musculoskeletal disease was the only one that trans people, as a population, had less of.

Cancer rates were also higher in trans people. 6.2% of trans men and 3.6% of trans women were diagnosed with cancer. The general population rates are 1.6% of cis men and 2.4% of cis women. The cancer rates seem to be because of increased risk of lung cancer from smoking, however Simonsen et al did not publish the details.

What about deaths?

10 trans people had died in Denmark between 1970 and 2014. That’s 9.4% of all the trans people in Denmark. The average age of death was 53.5 years. The average age of death for the general population in Denmark is 81.9 years for women and 78 years for men. The causes of death were mostly from smoking and alcohol abuse. However, two trans people committed suicide. One was 19 years after surgery, the other was 26 years after surgery.

What do these results mean?

First, that gender-related surgery for trans people does not increase the risk for medical disease. There was no change in disease before and after surgery.

Second, rates of cardiovascular disease, lung disease, cancer, and alcohol-related disease are higher in trans people than in cis people. Smoking tobacco and alcohol seem to be the cause, not hormones. And smoking and alcohol are likely because of stress from discrimination and gender dysphoria.

Third, the average life expectancy for trans people in Denmark is much lower than the general life expectancy. Again, this is because of smoking, alcohol, and suicide.

What are the caveats?

This was a tiny sample. While 104 trans people is a large sample for trans research, it’s a small sample to try to draw large conclusions from. Worse, some of the sub groups were miniscule. It’s near impossible to draw accurate conclusions from only 4 people with lung disease, or 2 suicides.

I was also surprised at the lack of HIV-related diagnoses in this study. HIV is prevalent in trans women in the US for complex reasons. Is the rate lower in Denmark? I don’t know.

And as always, this was one study in one country. Every culture and country is different, with different levels of discrimination and different cultural standards. So we can’t make assumptions about other cultures based on this one study.

Despite the limitation, this is an excellent exploratory study. We should continue to look for more data coming out of Denmark to see what more we can learn.

The term intersex is synonymous with differences/disorders of sexual development (DSD). We are taught in grade school that men have XY chromosomes and have a penis and testicles. Women are XX and have a vagina and uterus. And some go so far as to claim that those two sexes are the only human sexes. Well, they’re wrong. People with DSDs or who are intersex are those whose biological sex is different in some way.

Obviously, human embryology is complicated. But here’s a simplified summary. As embryos we’re all the same. Our gonads are the same blobs of tissue. The genital tubercle, a lump of tissue with a fancy name, can become either a penis or a clitoris. With testosterone and working testosterone receptors, the tubercle grows and becomes a penis. Likewise, the gonads become testicles. Without testosterone and working receptors, those structures become a clitoris and ovaries.

What are intersex medical conditions?

A roman fresco of Pan and Hermaphroditus, found in Pompeii. Hermaphroditus was the origin for the term “hermaphrodite”, which is an old and no longer used medical term for intersex/DSD individuals

Here are two examples of intersex/DSD medical conditions.

An individual can have XY chromosomes, have testosterone, but have testosterone receptors that don’t work. Without working receptors, their body develops along the “female” path. They have a vulva, vagina, and clitoris. They also have testicles inside. This is called Androgen Insensitivity Syndrome (AIS).

AIS can be “complete”, where the receptors don’t work at all. Or it can be “incomplete” where the receptors work a little, and the person has a more mixed biological picture. Individuals with AIS often present and think of themselves as female. They may not even know they have AIS until they don’t have periods or try to get pregnant.

On the other hand, an individual can have XX chromosomes and have hyper-active adrenal glands. The adrenal glands sit on top of the kidneys and produce a lot of different hormones. That includes some sex hormones. So hyperactive adrenal glands means more testosterone. More testosterone means that genital tubercle becomes a penis and the labia become a scrotum. So the individual has a penis and scrotum, but has ovaries hidden inside. This is called Congenital Adrenal Hyperplasia (CAH).

Like AIS, CAH can be more “complete” with a fully developed penis and scrotum. CAH can also be “incomplete” with a mixed picture. Individuals with CAH often identify as female. Some do identify as male. Some forms of CAH are potentially fatal, since the adrenals also make hormones that change how salt is handled by the body. Individuals with that form of CAH, called “salt wasting”, need to take steroids lifelong. Today, we test infants for CAH at birth.

Other forms of intersex exist. However those are the two discussed in the paper. If you’re not familiar or comfortable with intersex terminology, it’s probably a fair place to start.

So what about this week’s paper?

This week is a paper published by Beale et al. They examined long term health outcomes in intersex individuals. Their paper summarizes the published research.

We don’t have a lot of data on long term health outcomes in intersex individuals. Physicians used to advocate for early surgery for infants and a gender assignment. Physicians feared that children would be confused if they knew they were intersex. So they recommended that the person not be told they were intersex. Then intersex adults spoke up.

Surgery for infants is no longer standard. Effective treatment of intersex children really only started in the 1960’s. It didn’t become patient-centered until much later. So we don’t have many older intersex people to study or listen to. But we are starting to collect data. Let’s look at what we have.

Congenital Adrenal Hyperplasia

People with CAH need to be on steroids life-long. The steroids keep the adrenal glands quiet. Without steroids, the adrenals go back to producing lots of testosterone. The person may become masculinized. And for some patients, the adrenals may produce too much of the hormones that balance salts and water. That is life-threatening. Consistent visits with a health care provider throughout their lifetime is important.

But we also know that steroids have their risks. Osteoporosis is one risk. So far, individuals with CAH do not appear to be at higher risk for osteoporosis. The other known risks for people with CAH are obesity, high blood pressure, and abnormal lipids (including high cholesterol). So far we don’t yet know if there’s a clinical impact yet. That is, we don’t know if people with CAH are at higher risk for heart attacks or strokes. Studies will continue to follow people with CAH to find out.

Individuals with CAH are able to get pregnant as long as they have a uterus. They do need higher doses of steroids during their pregnancy. Additionally, they may need psychological support through their lifetime. But their quality of life is similar to that of people with other adrenal conditions.

Androgen Insensitivity Syndrome

AIS does not have a long term need for medications like CAH does. However, there are risks associated with having testicles inside the human abdomen. Testicles like to be kept cool. That’s why they migrate to the scrotum. Individuals with AIS are infertile because of the warmth of the abdomen. And testicles that stay in the abdomen have a risk of developing cancer. For that reason, we advise people with AIS to have their gonads surgically removed.

Some people with AIS may choose to keep their gonads until they go through puberty. The testosterone that’s produced by the testicles gets converted to estrogen in their bodies. So they can have puberty without taking hormones. Keeping the gonads that long is a risk, though. People with AIS need to talk with a knowledgeable physician about gonad removal.

For people with AIS who have had their gonads removed, starting hormone replacement therapy is crucial. Sex hormones are needed for healthy bones. If they have a uterus they should receive both estrogen and progesterone. The progesterone protects the uterus from developing cancer. If they don’t have a uterus, they can take just estrogen. Remember – their testosterone receptors don’t work, so giving testosterone won’t help. Individuals with AIS can become pregnant through egg/sperm donation if they have a uterus. Otherwise they will need to adopt or use a surrogate.

Just as with CAH, psychological support for people with AIS may be crucial. AIS can also be diagnosed later in life than CAH, so making sure the patient knows their diagnosis and is supported during that time is important.

Conclusion

As with LGBT health, we just don’t know a lot about the long term health of people with intersex conditions. Long term risks of cancers like breast cancer, cardiovascular disease, and other diseases/disorders are unknown. Stay tuned, and I’ll continue to cover studies as they’re published.

What can you do with this information?

First — if you are an intersex individual or have been diagnosed with a DSD, I recommend joining a study. We need data. Second — find a doctor who treats you well. Keep them in the loop. See them regularly. Ask them questions. If you need to change doctors, make sure you have all your records. Third — take care of yourself. Eat well. Exercise Take your medications. Avoid or reduce drug use. And remember to breathe and enjoy life.

Welcome back to Open Minded Health Promotion! This week we’re looking at health promotion for transgender men and individuals assigned female at birth. Depending on your history some of these tips will apply more or less to you.

Please remember that these are specific aspects of health in addition to the standard recommendations for everyone (e.g., colonoscopy at age 50). Based on your health and your history, your doctor may have different recommendations for you. Listen to them.

All transgender men should consider…

Talk with their doctor about their physical and mental health

Practice safer sex where possible. Sexually transmitted infections can be prevented with condoms, dental dams, and other barriers. If you share sexual toys consider using condoms/barriers or cleaning them between uses.

Consider using birth control methods if applicable. Testosterone is not an effective method of birth control. In fact, testosterone is bad for fetuses and masculinizes them too. Non-hormonal options for birth control include condoms, copper IUDs, diaphragms and spermicidal jellies.

If you’re under the age of 26, get the HPV vaccine. This will reduce the chance for cervical, vaginal, anal, and oral cancers.

Avoid tobacco, limit alcohol, and limit/avoid other drugs. If you choose to use substances and are unwilling to stop, consider strategies to limit your risk. For example, consider participating in a clean needle program. Vaporize instead of smoke. And use as little of the drug as you can.

Maintain a healthy weight. While being heavy sometimes helps to hide unwanted curves, it’s also associated with heart disease and a lower quality of life.

Exercise regularly. Anything that gets your heart rate up and gets you moving is good for your body and mind! Weight bearing exercise, like walking and running, is best for bone health.

Be careful when weight lifting if you’re newly taking testosterone. Muscles grow faster than tendon, thus tendons are at risk for damage when you’re lifting until they catch up.

Seek help if you’re struggling with self injury, anorexia, or bulimia. Trans men are at higher risk than cis men for these aspects of mental health.

If you have unexplained vaginal bleeding, are on testosterone, and have not had a hysterectomy notify your doctor immediately. Some “breakthrough” bleeding is expected in the first few months of testosterone treatment. Once your dose is stable and your body has adapted to the testosterone you should not be bleeding. Bleeding may be benign but it may also be a sign that something more serious is going on. Contact your doctor.

In addition, talk with your doctor if you have pain in the pelvic area that doesn’t go away. This may also need some investigation. And s/he may be able to help relieve the pain.

Be as gentle as you can with binding. Make sure you allow your chest to air out because the binding may weaken that skin and put you at risk for infection. Be especially careful if you have a history of lung disease or asthma because tight binding can make it harder to breathe. You may need your inhaler more frequently if you have asthma and you’re binding. If this is the case, talk with your doctor.

If you’ve had genital surgery and you’re all healed from surgery: there are no specific published recommendations for caring for yourself at this point. So keep in touch with your doctor as you need to. Call your surgeon if something specific to the surgery is concerning. Continue to practice safe sex. And enjoy!

Your doctor may wish to do other tests, including…

Cervical cancer screening (if you have a cervix). The recommendation is every 3-5 years minimum, starting at age 21. Even with testosterone, this exam should not be painful. Talk with your doctor about your needs and concerns. Your doctor may offer a self-administered test as an alternative. Not every doctor offers a self-administered test.

Mammography even if you’ve had chest reconstruction. We simply don’t know what the risk of breast cancer is after top surgery because breast tissue does remain after top surgery. Once you turn 50, consider talking with your doctor about the need for mammography. In addition, if you’re feeling dysphoric discussing breast cancer then it may be helpful to remember that cis men get breast cancer too.

If you have not had any bottom surgery you may be asked to take a pregnancy test. This may not be intended as a transphobic question. Some medications are extremely harmful to fetuses. Hence doctors often check whether someone who can become pregnant is pregnant before prescribing. Cisgender lesbians get this question too, even if they’ve never had contact with cisgender men.

And most importantly: Take care of your mental health. We lose far too many people every year to suicide. Perhaps worse, far more struggle with depression and anxiety. Do what you need to do to take care of you. If your normal strategies aren’t working then reach out. There is help.

On June 17, 2016 The Lancet, one of the UK’s most prestigious medical journals, published an entire series dedicated to global transgender health.

The World Professional Association for Transgender Health biennial conference happened over the weekend of June 17-21. I wasn’t able to go this time around, so I can’t report on it directly. But! It looks like it was a fabulous conference. Topics ranged from surgical techniques to cancer prevention to health and psychological care for transgender youth. You can see the schedule yourself.

The Pentagon has announced that it will begin allowing transgender people to openly serve in the US military next month. No details on what that means for veterans or formal military who were dismissed from service because of that status have yet been revealed. Source.

Welcome back to Open Minded Health Promotion! This week is all about how cisgender women who have sex with women, including lesbian and bisexual women, can maximize their health. As a reminder — these are all in addition to health promotion activities that apply to most people, like colon cancer screening at age 50.

All cisgender women who have sex with women should consider…

Talk with their physician about their physical and mental health

Practice safer sex where possible to prevent pregnancy and sexually transmitted infections. Some sexually transmitted infections can be passed between women. If sexual toys are shared, consider using barriers or cleaning them between uses.

If under the age of 26, get the HPV vaccine. This will reduce the chance for cervical, vaginal, anal, and oral cancers.

Avoid tobacco, limit alcohol, and limit/avoid other drugs. If you choose to use substances and are unwilling to stop, consider using them in the safest ways possible. For example, consider vaporizing marijuana instead of smoking, or participate in a clean needle program.

Maintain a healthy weight. Women who have sex with women are more likely to be overweight than their heterosexual peers. Being overweight is associated with heart disease and a lower quality of life.

Exercise regularly. Weight bearing exercise, like walking and running, is best for bone health. But anything that gets your heart rate up and gets you moving is good for your body and mind!

Seek help if you’re struggling with self injury, anorexia, or bulimia. These issues are much more common in women than in men, and can be particularly challenging to deal with.

Cervical cancer screening/Pap smear. All women with a cervix, starting at age 21, should get a pap smear every 3-5 years at minimum. Human papilloma virus (HPV) testing may also be included. More frequent pap smears may be recommended if one comes back positive or abnormal.

Pregnancy testing, even if you have not had contact with semen. Emergency situations are where testing is most likely to be urged. Physicians are, to some extent, trained to assume a cisgender woman is pregnant until proven otherwise. If you feel strongly that you do not want to get tested, please discuss this with your physician.

BRCA screening to determine your breast cancer risk, if breast cancer runs in your family. They may wish to perform other genetic testing as well, and may refer you to a geneticist.

If you’re between the ages of 50 and 74, mammography every other year is recommended. Mammography is a screening test for breast cancer. Breast self exams are no longer recommended.

One note on sexually transmitted infections… some lesbian and bisexual women may feel that they are not at risk for sexually transmitted infections because they don’t have contact with men. This is simply not true. The specific STIs are different, but there are still serious infections that can be spread from cis woman to cis woman. Infections that cis lesbians and bisexual women are at risk for include: chlamydia, herpes, HPV, pubic lice, trichomoniasis, and bacterial vaginosis (Source). Other infections such as gonorrhea, HIV, and syphilis are less likely but could still be spread. Please play safe and seek treatment if you are exposed or having symptoms.

What is Open Minded Health?

OMH is dedicated to providing information about gender and sexual minority health. Posts are a mix of the latest research, activity risk reduction tips, and the latest news.

This blog is definitely not suitable for children, and probably not work safe. It contains descriptions of sexual activities that may disturb some readers.

Also please be aware: I am not a doctor. OMH does not provide health care advice - the information here is to be used as information only. It does not substitute a visit to your health care provider. When in doubt, please ask your health care provider.

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